Nursing instructor advocates for rare disease bill
In April, nursing professor Kerri Nelson testified in a subcommittee within the House of Representatives, pushing for House Bill 3956—a bill that would establish the South Carolina Rare Disease Advisory Council within the Department of Health and Environmental Control. The bill passed through the subcommittee, the full committee and passed the majority vote in the House of Representatives. Nelson’s next step? Get it passed by the Senate.
Nelson has been a faculty member of Charleston Southern University since 2017, but in 2018 she joined the advocacy subgroup of the National Organization for Rare Disorders (NORD). The Rare Action Network’s mission is to connect and empower individuals with the resources to become advocates for rare diseases across the country, and Nelson did just that. She has been able to work both as a nursing professor and as South Carolina’s State Ambassador for Rare Action, participating in Washington D.C.’s NORD Rare Summit, advocating for the Orphan Drug Act and hosting Rare Disease Day events here in South Carolina.
Nelson says she took over this role after her son was born and diagnosed with Mosaic Trisomy 22—a rare chromosomal disorder in which chromosome 22 appears 3 times instead of twice in certain cells of the body.
“Our experience was what led me to have a passion for rare disorders and advocacy,” said Nelson. “When [my son] was a year old, I went back to school for my doctorate in nursing and focused my work on the rare community. This is when I found the National Organization for Rare Disorders and the Rare Action Network. It is a blessing to have two passions collide. In this role, I have a perspective not only as a mother to a child with a rare disorder, but as an advanced practice nurse as well.”
Although her son’s disorder is considered rare, Nelson states that an average of 1 in 10 people have a rare disorder, making it more common than most believe.
As a SC State Ambassador for RAN, Nelson and the subcommittee are currently working on implementing a Rare Disease Advisory Council (RDAC) in South Carolina. Across the United States, there are currently 17 active RDACs, with more being considered as of now. The RDAC includes patients, caregivers, health care providers and researchers within the Rare community, all of whom help educate state officials in implementing policies and procedures that will help provide a voice to this community within the state government. Nelson says that her focus is to implement a state specific resource that focuses on the rare disease community needs within South Carolina.
Nelson has been actively pursuing that goal, evident in the House Bill passed just a few short weeks ago. She orally testified via Zoom in a subcommittee within the House of Representatives, where the bill passed and is now being sent to the Senate. Bill 3956 will seek to add the South Carolina Rare Disease Advisory Council within the Department of Health and Environmental Control of South Carolina law codes. With its enactment, the bill will provide for the purpose, duties, membership and funding of the Council, as well as establishing medical requirements and awareness for those with rare disorders.
When Nelson is not busy working at the advocacy level, she maintains her teaching career in the nursing department at CSU. She is thankful for her co-workers, who have helped support Bill 3956, and for her superiors, who have allowed her the time to travel and advocate for the organizations in which she participates. Nelson was also given the opportunity to teach the genetics concentration course at CSU, providing students with rare disorder learning opportunities.
“A goal of mine is to implement a Students for Rare chapter group at CSU in the future,” she said.
Students for Rare is a National Organization for Rare Disorders Chapter that spreads awareness for rare diseases, establishing relationships and partnerships between students who seek opportunities within the rare disease space.
While the bill is currently being sent to the Senate, Nelson encourages increased recognition for rare disorders. For more information, go to the Rare Action Network website.
Emma Slaven is a recent alumnus and was a spring intern for Marketing & Communication.